Derma Care Action Network Representative

Nevus Outreach Representative to Derma Care Action Network

Nevus Outreach Representative to the Haystack Coalition (Volunteer Position)

Position Overview

Nevus Outreach is seeking a dedicated volunteer to serve as our official representative to the Derma Care Access Network (DCAN). DCAN is an independent, non-profit coalition focused on protecting and enhancing access to patient-centered dermatological care. This role will ensure that the needs of individuals affected by congenital melanocytic nevi (CMN) and neurocutaneous melanosis (NCM) are represented in discussions on dermatological care access, policy advocacy, and educational initiatives.

Commitment & Responsibilities

• Meeting Participation: Attend and actively participate in DCAN’s monthly virtual meetings on the third Thursday of each month from 12:00 - 12:45 PM EST.

• Policy Advocacy: Stay informed about federal and state policy initiatives impacting dermatological care access. Advocate for policies that support CMN and NCM patients, addressing barriers such as utilization management protocols that can delay necessary treatments.

• Educational Collaboration: Collaborate with DCAN to develop and disseminate educational materials that raise awareness about CMN and NCM, highlighting the importance of timely and appropriate treatment.

• Communication: Provide a written report of activities and updates to the Board of Directors quarterly on the DCAN’s initiatives, policy changes, and advocacy opportunities.

• Networking: Build relationships with other patient advocacy organizations, healthcare providers, and stakeholders within DCAN to promote shared goals of improving dermatological care access.

Who You Are

The ideal candidate is passionate about dermatological health advocacy and is committed to representing the interests of the CMN and NCM community. Preferred qualifications include:

• Lived Experience: Personal experience as an individual with CMN or NCM, or as a caregiver to someone affected by these conditions.

• Healthcare Background: Experience in an allied health profession, such as nursing, physician assistant, physical therapy, occupational therapy, speech-language pathology, public health, medical social work, or genetic counseling.

• Advocacy Skills: Strong communication and advocacy abilities, with an interest in public policy and healthcare access.

• Commitment: Ability to attend monthly virtual meetings and provide regular written reports to the Board.

Why Serve?

• Impact: Play a crucial role in advocating for CMN and NCM patients at a national level, influencing policies that affect access to dermatological care.

• Experience: Gain valuable insights into healthcare policy, patient advocacy, and the legislative process.

• Community: Join a network of professionals and advocates dedicated to improving dermatological health outcomes.

This is a volunteer position requiring an initial one-year commitment for 2025, with the possibility of extension into 2026 and beyond. The position will begin service in May 2025.

If you are passionate about advocating for those affected by congenital melanocytic nevi (CMN) and neurocutaneous melanosis (NCM), we encourage you to apply!

Time Commitment:

• Flexible, with an estimated 3-4 hours per month.